My Lived Experience of the Covid Epidemic

My Lived Experience of the COVID Epidemic 

Post viral infections are nothing new, so why no data, understanding of the biomedical research or concern over PPE? Why no research into ME/cfs especially now with Long Covid who fall into the PEM and ME diagnosis.

Being a carer of a severely effected young person from the age of 8 who is now 18, I have had to fight to be heard every second of every day. I have had to find how to support and care for my son without proper data or research. I know more about ME and PEM than that of the professionals I meet and yet I am silenced. Mine and millions of others lived experience can tell us so much about post viral disease and the consequences of not giving the proper understanding and treatment. How misinformation and disinformation by professionals, journalists and politicians have impacted in such an egregious way.

Should the Covid Enquiry demand a full enquiry into the history of failure, especially of the PACE trial involvement, which allowed in opinion and bias against the science and evidence of the lived experience of those who have had to live alone with a chronic and devastating post viral disability? We should examine why Sir Mark Walport and others have not taken down the pace trial and other such harmful papers.

The impact on me, my family, and my son of the Covid epidemic is beyond words. First trauma of knowing what was about to happen, the lack of professionals to meet the needs of those left with ME and PEM. I often wrote “my heart fills with shame and tears” because I knew what was to come. The inappropriate research and rehabilitation centres, the false accusations on parent carers like me. The misuse of funds the denial of education and all the trauma of waking up to the next fight against injustice, discrimination, scrutiny and misinformation or disinformation from those we should trust.

If the Inquiry into the status of cfs/ME and research into the causes and treatment, published in 2006 had been followed up with proper long-term data; including autopsy and biomedical research needs to be discussed openly now?  Would we or should we have been in a better place to fight covid deaths, support and save those with Covid damage and Long Covid. If the PACE trial had been thoroughly reviewed by an independent inquiry after the court case, what lessons could have been learnt and what still could be learnt.

The ME community was fighting in October 2021 the biopsychosocial model holding on to the status quo in the ME pathway. This was extraordinary in a pandemic with many coming down with ME and PEM with no symptoms or hospital admissions. Peter Todd was preparing legal aid for a young man to force NICE to follow procedure and release the New Guidelines.

With the Will Quince review now underway into ME, this review will not change the bias or the disregard to those devastated by this pandemic. Without taking down the PACE trial no clear understanding of ME and PEM will be gained. This Governments support to Functional Neurological Disorder introducing IAPT and Medically Unexplained Symptoms with many in the medical profession stating NICE is just a guideline, those that could be saved from long term disability and be able to recover, is going to be taken away from them, as it was with my son 10 years ago.

We need to stop the ability of bias opinion over science, excluding evidence quoting the PACE trial to do so. We need to combine the knowledge of postmortem, data and lived experience to be given the respect so often talked about but not acted upon.

For me and the millions missing this is the story of Covid, the trauma and disregard of the lived experience and to the known medical facts.

How is the PEM 3 Days in

 

How is the PEM going after the exam, well it normally takes 4 days for Angus to experience the full impact of his Post Exertional Malaise (PEM). PEM simply means an increase in symptoms and a decrease in ability to be active, things like listening and reading are affected when in a PEM state. His exam was on 23^rd May 2023, this was written on the 26^th.

I want you to come along on the journey with me. There are 101 reasons why but taking you with us as we journey through the impact of PEM, I hope you will learn something useful and understand us more.  

So far, he has been fooling around the house with the extra adrenalin, talking to his mates and watching a movie on his laptop with them on Face Time. I’m going to try to tell you of the double edge sword of these moments. After 10 years of living through the complex cycle of PEM, I hold on to those moments of who he really is and marvel at the young man who has had to learn to wear expertly the mask of normality.

I have spent most of the time giggling at his antics, like a ghostly entity that swoons around the house in a cloud of contented energy, silent and unseen, as he roams outside and looks in at the windows with funny and googly faces. I have learnt over the time of his illness that these moments of normal life, is to be savored. Not hoped for with by every fiber in my body, as I once did because the pain of the let down as he progressively slips into pain and suffering of PEM, is too much for my heart to take.

Sadly, with every inch of mindfulness I try to possess so that I can curb this innate response to my child’s contented ownership of time, to shout out that recovery is here. I never can use that mask of mindfulness and hide behind positivity because that positivity has broken me many times before.

Living with someone who has severe PEM is like living with someone who has periodic Alzheimer’s. You can’t ask questions because they get lost, they slip through the gaps in the brain forged by dysregulation of every system in his body. You have to second guess what is needed, wanted, or the question they need answering.

Angus uses FaceTime to ask for help when his pain is bad, and his heart rate is bouncing around his chest like an excited monkey.

It goes something like this he calls me on FaceTime.

Me “you ok”

Angus “you’re talking too loud”

Me “sorry”

Angus “what did you want mum?”

Me “you rang me”

With frustration he ends the call only to reconnect a couple of seconds later. By this time, I figured that he needs water, it could be food but I’m guessing it is water.

I answer with a softer voice “would you like me to bring up water?”

Angus “what?”

Me “Water?” at this point, less words means a better outcome”.

Angus “Yes”

It is a weird experience when the person you know changes in a flash from someone who is verbally articulate, to one that is unable to communicate a simple need such as - needing water. It comes with so much frustration from us both, but it always makes me giggle a little. How funny our existence is now.

I take the water up and then lay by him in bed. I feel there is something going on that I had not picked up and he needed time to get his brain to work out what it was. He drank 2-3 glasses of water straight down; I could see the dry lips already taking shape. He then took me through a question he had in the exam. He spoke fast and in a fragmented way. It was like being fired at by one of those tennis ball flinger things, with someone changing the direction and speed. Then it happened, the full flow of what I can only describe as intelligence on another level, coherent and concise. I know at this point I cannot interrupt him or ask questions, but to keep up as best as I can because he will be giving me a test at the end of it all.

He took another gulp of water and asked, “Well what do you think? Did I do alright on that question”.

My first thought was, if you answered as you had in the last bit of the information he just articulated then yep; if only I knew what the question was.. However, if it was like the first part of your explanation then I have no idea. What I actually said was “I’m not an examiner but it sounded amazing to me”.

“Not helpful mum”.

“I know but it’s the best I can do”. It’s his laugh that has me in a contented lull of life. He knows me better than I know myself, I think.

He then informed me he needed to space out and chill listening to audible, his only way of switching off his brain a little, to help with energy saving.

“Where are your ear buds I asked”.

“Under the bed I’ll get them in a minute”.

I know this would be too much for him, I looked under the bed and there they were at the furthest point, against a wall. I got the grabber thing we use as I am short, and our cupboards are tall it is a very useful tool for many occasions.

I have the most horrendous uncontrollable laugh ever possessed as a giggle morphed in to a belly laugh. There I was stuck by both my north and south appendages, under a bed with a grabber thing, trying hard to fling out or grab 2 very small and slippery earbuds. We both ended in hysterics.

Obviously, I did get unstuck in the end and yes Angus did video my heroic effort. A kept moment that I will constantly look back on. However. Having fun and being normal can make you feel a fraud. You are either ill or not, there is no area in between where life lurks a little.

I know we should grab every occasion to laugh as hard as we can, we deserve it after all. But laughing never ever makes up for the loss we face on a daily basis, nor does it stop me or Angus from having to wear a normal mask because the public and medical fraternity demand it and neither can they deal with the reality of chronically illness.

To constantly be positive is positively harmful though and although there is no crime in having fun and laughing spontaneously society can make you feel as if you are chronically ill you have to prove it every second of every day. More importantly is that it is OK to show the world what it is to live with illness that takes your life, dreams away and for society to accept it.

 

How Have We let This Happen Again? Forced Adoption

How Have We let This Happen Again? Forced Adoption

On Tuesday 11^th September 2018, I attended a seminar in Westminster with a determined, courageous and inspiring group of mothers who have come together and created the support/campaign group @Fiightback.

This Seminar was organised by Legal Action for Women a grass roots legal service. LAW have worked tirelessly since their creation in 1982 to enable women who have historically been silenced get their voices heard and their rights recognised.

This seminar was called “Do NO Harm”

One of the guest speakers at this seminar was Mr Andy Bilson Emeritus Professor of Social Work at the University of Central Lancashire, who is working on the rising levels of children going into care. Professor Bilson spoke about the increase in child protection figures, which alarmingly in children before the age of 5 is now at a staggering 1 in 16 children. Professor Bilson went on to clarify that equates to a staggering 52 % rise in adoptions before the age of 5. These are truly astounding figures.

Here at Fiightback, we are seeing an alarming increase in child protection cases involving children with chronic and complex illnesses along with children with autism. It would appear mothers/parents seeking appropriate statutory support (EHCP’s) due to the multisystem needs of their children seem to be targeted for Fabricating and Inducing Illness; a new term for the old Munchhausen Syndrome by Proxy.

I was shocked when listening to the first hand personal accounts of these proceedings, which were read out by courageous but still clearly traumatised family members. Emma Lewell-Buck MP, Shadow Minister for children and Families also gave a stirring speech about how the practice of forced adoption has been reinstated. It took me right back to the 50s 60s and 70s and I ask the question how could we let this happen again?

How have we regressed back in time from a point where the Prime Minister has issued an apology for those children harmed by forced adoptions in the 50s – 70s, to where it is now happening again for no good reason in 2018?  Support is what is desperately needed in our society not separation.

Draconian measures are being ratified in both the USA and UK, an outcry went up when Donald Trump took children away from mothers in the US and yet the state can do the same here and we hear nothing?

Our support system is now turning on families aggressively harming innocent children without due care, understanding or process whilst other countries look on with astonishment. We should be hanging our heads in shame.

When people like Lord Nash, former Conservative Parliamentary Under Secretary of State for Schools and co-founder of the charity Future, are sponsoring academies that are running out of control. Is it really surprising that we find our education, health and social care doing the same? It has now been revealed that the same thing is happening with forced adoption, which was another reform Lord Nash was calling for.

In the Queens’s Speech the UK Conservative Government introduced a Children and Social work Bill. This was to ensure that children could be adopted into new families without delay. It was supposed to improve the standard of social work and opportunities for young people in care in England. The resulting reality is anarchy and misuse of forced adoptions.

We then come to supporting a child’s needs when in the care system. Care for sick children is wholly inadequate with children physically unable to take a shower for themselves, they are often left alone with no education, no healthcare provision or dental appointments, all because they have conditions that are little understood and do not get me started on how they are viewed by professionals.

Dr Speight, a leading and world-renowned specialist in Myalgic Encephalitis (ME) a complex condition with many systems that have dysregulation that makes the condition complex and hard to understand, also comes under attack from other professionals who use the system to their own gain and advantage. Dr Speight has never shied away from protecting children, but he often suffers due to putting his head above the parapet as the NHS whistle blowers do, he explains:

Parents naturally move heaven and earth trying to get a diagnosis and the “treatment”, often needing several “second Opinions”.

When the treatment doesn’t work or makes the young person worse the parents are blamed for withholding from treatment.

He goes on to say

I’ve seen several cases of proceedings driven almost certainly by a desire for revenge on the part of the professionals.

Dr Speight has attended 20 families accused of FII in the last 5 years who have been taken to case Conferences. The wretchedness of having an ill child who is deteriorating with no treatment, let alone fighting the system is utterly devastating. With Tymes Trust having over 200 cases of families being falsely accused, at some point someone somewhere must look at this situation and recognise the system is not only failing but is not fit for the purpose that was originally intended.

We hope this seminar will provide the long overdue recognition this issue demands.

We have to stop the rot and discrimination.

Listen to those that know Dr Rowe from the US and DR Speight from the UK 

http://voicesfromtheshadowsfilm.co.uk/paediatric-mecfs/

Both have written in the world renowned 2017 paediatric 

 https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

ME Diagnosed by Post Exertional Malaise (PEM), So Why Treat With Exercise?

My son was left bedbound by Cognitive Behaviour Therapy (CBT) that told him not to speak about the increasing pain, the blackouts he was experiencing, the stiffness and cold joint pain, the headaches - when he thought his head was exploding. The symptoms are all part of Post Exertional Malaise (PEM). This makes ME unique - every activity, thought, feeling or laughter causes PEM. ME is not a fluctuating illness without a cause. The fluctuation comes from overdoing, which causes increasing severity of symptoms, and further damage to the many systems within the body.

You keep in a rested state you can live relatively free of pain. You increase in the wrong way at the wrong time; you cause damage to your body. This has been proven, and can be tested with a two day physical cardiopulmonary exercise test (CEP). This test has been known about since 2011. If you do a CEP test and then do MRI or SPEC scans, with bloods taken, the damage can be seen! Blood serum and microbiome tell a complete, yet individual story. We will have to look at biomarkers in a different way as every little thing affects ME sufferers, changing the markers.

My son was 8 in 2013, when the psychiatrist and multidisciplinary team he was under insisted on him going to school, and put him on Graded Exercise Therapy (GET). They said he had reached a baseline? He was suffering more pain but they told him not to mention this, so how could they tell he had reached a bassline where his symptoms were under control? This multidisciplinary team did not test for POTS, EDS, coeliac or infection like Lymes. The coexisting conditions well known to those that understand ME.

Since the beginning of time people have understood about Flu and the symptoms?  That awful stage of when your eyes are suck with cocktail sticks, your ears are sore and are ringing, joints ache and burn, cold sweats or raging temperature, your tummy is out of kilter and going to the bathroom is like climbing Mount Everest? You cannot face eating and you constantly feel sick. We did not need to know its pathway and we understood it took some time to get over. That was until HIV and AIDS. Now we understand that all sorts of chronic conditions can be caused by assaults upon the body, we are learning how B, T cells work and cytokines. The cause of inflammation and how autoimmune can seriously impact upon a body after infection, we are beginning to understand how Sepsis sets in.

We are beginning to appreciate how all the dots of Cells, cytokines, ATP, inflammation and DNA changes impact, glycolysis and lactic acid cycle, all these problems, centre around the central nervous system, gut and brain and the damages or changes through our DNA.

Yet I am the one who is told I am in “science denial”, an ME activist portrayed by Professor Crawley as some sort of criminal, for wanting to learn all I can about the illness that consumes my son? A person who has a belief that I cannot let go of? Once silenced by threats of Fabricating or Inducing Illness, but NO MORE!

I have been abandoned by the medical profession! They don’t know about all the physical problems and only told to treat with ever increasing activity. I am seen through the preaching of Professor Crawley. SMILE trial based on the Lightning Process, FITNET-NHS with the WII fit, parents re-educated about illness beliefs? Set on by society because my child’s body fails to keep up.

I have found the facts. With those facts I now have my son out of bed but house bound. So when you listen to Professor Crawley won’t let the Children speak of their negative experiences, and carry on with exercise regimes REMEMBER DO NO HARM REMEMBER ME! 

I would like to take the time to explain what happens to a child with ME as Professor Crawley who educates other doctors, and does not seem to grasp the concept or take the time to observe. Any activity causes the body to disregulate in may systems deepening on the ME suffer as an individual. This is from watching TV to laughing at a joke. https://youtu.be/DNNeE6rhTm0

Interview with David Tuller PhD, May 2017

https://www.youtube.com/watch?v=xbikuCqoD98&t=160s

Stop The Abuse - Dr. Myhill On PACE Exposed

https://www.youtube.com/watch?v=LasPOnRx1Ek